This post is by Tara Washburn, an adult with Asperger’s Syndrome. She says, ‘I was diagnosed with Asperger’s Syndrome at age 28. I have spent the last 5 years coming to understand where I am now and what was happening inside of myself when I was a moderate-low functioning child. This is Autism from my perspective – Autism from the inside out.’ Visit Tara’s Blog, ‘Hearts that Feel‘ for more.
Autistic individuals are often put into a spectrum. This spectrum is an indicator showing how well your loved ones are able to adapt in society. I also have a spectrum, but it has a different meaning.
Everyone is on my spectrum. There are many that are on the low end of your spectrum that are on the highest end of mine. There are many who are successful (according to the world) who use manipulative means to make circumstances suit them. These people are on the low end of my spectrum. My spectrum measures function in lies or truth. It measures from despotic darkness to liberating light.
I do not pretend to be, or comprehend, the light. But I’d like to share my understanding of it and how it relates to individuals that are placed on your spectrum.
The light of truth is blinding when we are not used to seeing it. For example, imagine that you are outside on a dark night and suddenly a brilliant flash of lightning streaks across the sky. Initially you flinch and are filled with both fear and wonderment. So much is determined in that flash of light. Either you cling to the fear of the lightning, so brilliant, powerful and scary, or you cling to the wonderment, so new and somehow enticing.
Likewise, in the end, we either choose the fear that leads to hatred and suffering, or we choose the courage that leads to love and healing. There is no other path, really. All choices ultimately end in either place: we cling to the darkness or we embrace the light.
There are several ways that the world can harm to your loved ones. There are selfish people who take advantage of others, evil people who molest and make afraid, misguided people who unintentionally harm, clumsy and careless people who maim by mistake. Yet, focusing on situations that bring harm, and the individuals responsible, will not bring light to those who are seeking it. It may “take down” one more institution or individual, but it will not stop the abuse, lies, greed and corruption at the heart of the matter. If you fight them using their own weapons, you lose. Period. You cannot experience a victory for light using darkness.
I have often seen homes that cling to fear – the pain and anguish never seem to vanish out of their lives. I have seen homes that embrace truth – the healing and light seem to permeate not only those who live there, but all who enter. When I enter this kind of home I leave feeling as though I am in Heaven for a moment. I have seen other children on the “spectrum” who are likewise affected.
If you truly want to help your child, forgive those whom you feel have wronged your precious one, no matter the motive and reason. Forgive, love and you will see your child light up. The next time he begins to rock and cover his ears, running from darkness, look inside, find light and show him that there is a safe space in you.
On July 19, a luncheon was held in Los Angeles to honor actor Ed Asner and his son Matt. Phillip Hain, Executive Director of the Los Angeles Chapter opened the program by giving an overview of what the chapter does in the community and talked about some of the local events. Attendees then heard from Dr. Clara Lajonchere, Vice President of Clinical Programs, who talked about the advances in science that have been made by Autism Speaks and its predecessor, Cure Autism Now, and how the Autism Genetic Resource Exchange (AGRE) has helped researchers be more efficient and collaborative with their studies. Marianne Toedtman, Associate Director of Family Services, talked about her challenges as a mother of a son on the spectrum, Family Services programs, and the current state of Family Services at Autism Speaks, particularly the Baker Summer Camp Program.
Ed talked about his involvement with Autism Speaks and how much work has been done since his son Charlie was diagnosed more than two decades ago. He implored the guests there to support Autism Speaks’ efforts in advocacy, family services, and science.
Matt told the attendees that when he was a teenager he was mad at his dad a lot, because his dad was the kind of guy who always took a stand on something and stuck to it, no matter what the cost was, to himself or others. And often the price he paid was very high. But now he realizes that his father set an example. Having both a brother and son affected by autism, Matt has become a passionate voice for our kids on the autism spectrum, fighting for their right to a fair and equal education in Los Angeles public schools. He noted that attending the Los Angeles Walk Now for Autism Speaks a few years ago gave him the feelings of hope and empowerment to help others.
Councilman Tom LaBonge presented Ed with a proclamation from the city of Los Angeles and Phillip gave Matt a piece of artwork created by a teen with autism, as a thank you for his continuing efforts and support.
This “In Their Own Words” is written by Matthew Asner, a film and television producer. He has a son with autism and has dedicated himself to working with charitable organizations such as Autism Speaks and fighting for the rights of those with special needs and in special education with his organization, Save Special Education. Asner was nominated for GQ’s The Better Men Better World Search. If he wins the competition, Autism Speaks will receive $10,000.
“We must accept finite disappointment, but we must never lose infinite hope.”
– Dr. Martin Luther King Jr.
I begin and end this post with quotes about hope. It is hope that drives me. It is hope that brings life to every second of my day. With so much hardship around us these days, hope is in short supply. We need our friends and neighbors now more than ever.
Four years ago my son was diagnosed with autism. Of course, this was devastating to me and my wife. I have a brother with autism and I had seen the constant struggle by my father and his wife to make sure my brother had consistent and appropriate help. I knew firsthand that the diagnosis of autism meant that raising my son would require a different, more demanding manner of care than that of his older, typical brother. But, when one of my son’s doctors told me that she didn’t believe he would be able to care for himself in the future and that we should make arrangements for his care, it was as if a gun went off in the examination room – BANG! She had just killed my hope. Murdered it in cold blood.
I walked to my car and sat for a while. I was close to tears and I knew my wife was crying in her car. A horrible thought came into my head. Why couldn’t she have told me he had cancer? At least then we would have a fighting chance. I walked around in a hopeless cloud for a year or so.
After attending my first Walk Now for Autism Speaks event, I realized that there were a world of people who wanted to feel the same way that I wanted to feel. My hope had been restored. The Walks made me a believer in the phrase “there is safety in numbers.” This is when I began to get involved with the special needs community.
As invigorating and empowering as those Walk days are, unfortunately, in daily life the autism community is fractured. Race, class, disability and, most of all, fatigue fracture us. All of this makes it difficult to come together and stand as one. At an Autism Speaks Walk, we stand as one. The time has come for us to do this every day.
As you all know, our economy is in terrible shape. As a result, the special needs community has seen programs slashed or eradicated completely, making it increasingly more difficult for families to deal with the additional stress. In these trying times, it is imperative for us to come together as a group.
Next time you are at a Walk, look around you. There will probably be 10,000 to 20,000 people there. We are an important voice. We are a passionate, strong group. And I hope being together makes you feel the same way it makes me feel. When I am at a Walk and I talk to people and take part in this energizing union of people with at least one common issue, I feel motivated. I feel power. Most of all, I feel hope.
It is up to us to take what we feel on those Walk days and incorporate it into our daily lives. If we are truly going to change the world and make it a better place for our children, we have to do it together. We have to join groups, and write to and demand representation from our elected officials, school superintendents and school boards. We have to know our rights and fight for what we are legally entitled to when we go into IEP meetings. We must find ways to be less intimidated by the process.
This can be our time – a time where we all come together and stand for the rights of our children and our rights as parents of a child living with autism. If we are alone, we are without hope. Together, we can change the world and make hope live.
“Hope is the companion of power, and mother of success; for who so hopes strongly has within him the gift of miracles.”
– Samuel Smiles
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to email@example.com. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
I feel hope every year at the Greater Hartford Walk Now for Autism Speaks.
I feel hope when my son tells me he is “proud he has autism.” I feel hope when his brothers say they had fun at the Walk for the first time.
At this year’s Walk, hope warmed me every time I personally met a mother I’ve spoken to after her child was diagnosed and she said, “Thank you.” Hope fed my tired spirit when my son’s friend and his entire family joined our Walk team. Hope inspired me, as 8,500 people lined up to walk for their sons, daughters, grandchildren, nieces, nephews, friends, and neighbors. Hope brought me to my knees as I watched families simply “be” with autism, not afraid of judgment or criticism. And hope brought me to tears as I gathered our legislative champions who I have worked so hard to get to join in the fight for our loved ones.
In 2009, Connecticut became the 13th state in the nation to require private insurers to cover the diagnosis and treatment of autism. Enactment of this bill finally ended autism insurance discrimination in Connecticut, but more importantly it brought hope to thousands of families.
Autism is now a buzz word in our state capitol of Hartford. Legislators are taking note of its impact on their constituents. We have champions who know our struggles, even know our kids’ names.
There is so much more to do to help the nation’s families affected by autism, so much more to do in Congress and in our state capitols. With hope in our hearts, we can and will prevail.
Hope is why I walk and it’s also why I advocate. Hope will be why I walk and advocate, until there is nothing to left to walk and advocate for.
Christopher Reeve said, “Once you choose hope, anything’s possible.”
I choose hope.
To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visitwww.autismvotes.org
The other day someone asked me to “say a little prayer that the Colts win the Super Bowl.” Was he kidding? As a parent of a child with autism, my prayers are reserved for my son. On the off-chance that there really is someone up in heaven that is listening to me, why would I pray for a Super Bowl championship (not that we aren’t fans – we have held season tickets for more than 15 years)? No, my prayers are reserved for Nick. I’d rather pray that he talks in sentences. I’d pray that he makes a friend. I’d pray that he could have a conversation with me. I’d pray that he doesn’t have to put his fingers in his ears to block out the noise when we visit a museum, a movie or any indoor event. I’d pray that he would be able to read. I’d pray that he could live a normal life – go to college, fall in love, have kids of his own.
Last week was my husband’s birthday and we went out for lunch with his mom. At the end of the meal, they brought him a dessert adorned with a lit candle and my mother-in-law asked what he would wish for. My husband and I, both affected by the poor economy, are out of work, so she figured he’d wish for a new job. But no, we looked at each other and he said that wishes are always reserved for Nick. How could we even choose a wish for just us? What could we possibly wish for that would be more important than adding to Nick’s life (okay … in this case a household income might be a good idea!) But, what if by some miracle these things really do come true? We can’t NOT do it for him! So, if an eyelash falls – it’s a wish for Nick. Throw a penny in the fountain – another wish! Falling stars, wishbones, necklace clasps, dandelions, ladybugs … wish, wish, wish.
Does any of it really come true? Probably not – so why do we keep doing it? It’s like buying a lottery ticket – a few minutes of hoping that his quality of life will change fast and miraculously. Hope is that feeling in your heart of good things to come. We all hope for a better tomorrow and if hoping keeps you going, then I’m all for it.
Isn’t it odd that I’ve never (really, never) wished or prayed that Nick didn’t have autism. It has never been about what was, but rather what could be. We went through the first couple years of his life testing him for everything – was it apraxia, a hearing loss; how about Fragile X? Why, or why wasn’t, this adorable little munchkin progressing like he was supposed to? Always looking forward, is there a way to fix it?
As Nick’s parent, I’m often struck by how ordinary life seems. Day in and day out, Nick lives with his family and we understand and love him. So, on this week before the Super Bowl, I reflect on these prayers and wishes that we all say. I’m sure that there are thousands of people throughout Indianapolis that will be saying prayers on Sunday for the Colts. But, I hope they don’t forget to put things in perspective. Do these guys – making millions, living in big houses, and driving fast cars – really need our prayers? With all the sadness in the world, reserve those prayers and wishes for the people in need.
In the end, I won’t pray for the Colts to win the Super Bowl although I will be watching the game and cheering them on. No, instead they will have to rely on the same things Nick does – hard work, practice and dedication to get them through.
This “In Their Own Words” essay is written by Karri Alberti.
If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.